Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My 75-year-old dad was diagnosed last month and spent 8 days in the hospital with a feeding tube and IvIG treatement which seemed to help. The Mestonin decreased his heartrate too severly so he also got a pacemaker put in. He improved enough to get the feeding tube out and went home only to have his symptoms start worsening after about 10 days. Now he's back in the hospital getting plasmapheresis and has a feeding tube again as he can not swallow - even ice chips. No thymoma. They told us to expect to be in the hospital at least 10 days but last night he had bleeding from his central line and he's in the ICU making sure that has stopped.
Just wondering if he's ever going to get on top of this. Is this a normal course at all? He's been very active - golfing, walking, swimming daily up until this point - and is feeling very discouraged.
What tests gave the MG diagnosis? Sometimes MG is a mis-diagnosis in the case of negative tests, and sometimes not. So the first question --is it a clear MG diagnosis?
Generally by the time MG is diagnosed, it is very far along, and for most of us the first 6 months are terrible as we have gotten so bad that it takes time for treatment to work and then to find out what long term treatment will be best to keep us functional.
My neuro, experienced in MG, counseled patience as I (65 year old male then), felt like life was not worth living, and I couldn't see any future ahead. It took me about 4 months - 6 months to get treatment working, and since then (5 years ago) things have been good. I was one of the 15% who after a year of MG and treatment went into remission and have continued for 4 years now living normally.
So tell him that the first 4-6 months are rough, but almost all of us get through that and then improve with treatment and get our lives back, not 100%, but good enough to be enjoyable and functional and worth living.
Good Luck,
Russ
He did test positive for ACh receptor antibodies so my assumption is that the neurologist is pretty certain of the diagnosis. Thank you for letting me know that the first several months are tough - the doctors made it seem like he'd go home to a mostly-normal life after his first hospital stay. He's been feeling rather hopeless and I don't feel like he's been given a realistic view of what his treatment will likely entail.